Saturday, December 29, 2012

Michael Vincent,


Our *perfect* little miracle...

This is probably one of the hardest things that I will ever write. It has taken me seven months to figure out how I would share my life with others; and to this day, I still do not have the answers on how to perfectly put how our lives have changed in under a year. What I do know, is that the story I am about to share has changed my life indefinitely and has really helped me to become the person I have always dreamt of being. That person being a strong, devoted mother to our beautiful unborn son.
 
I once was told, "Life works in mysterious ways Megan; you never know what life will throw at you next". "All you can do is roll with the punches and learn how to swing back at life". Little did I know, life was really going to throw me some intense curve balls that I nor Mike ever thought we would be facing together.

Looking back seven months ago (mid-July 2012)...........

Waking up on this day was not unlike any other day, but little did I know it was a day that my life would change forever. I rolled out of bed, took a quick shower, got ready for work, yelled upstairs to my Mom "Have a good day, I'm leaving for work... see you later!" and hopped in the car. On my drive to work I noticed that my chest was feeling very sore; more sore than it has ever been. In the afternoon, I explained to my co-worker how horrible my chest felt. She laughed at me and said, "Well the last time my chest felt that way, I was pregnant." Her words gave me immediate chills. "Pregnant? Well, there is no way that I am pregnant- that's impossible". I laughed it off, but I could not get the thought out of my head. Could I be pregnant? I kept telling myself that I couldn't be. I quickly blocked her words out of my head until I left work. As I was driving home, I took a sharp turn into Rite Aid parking lot and sat there for a good five minutes debating if I should buy a pregnancy test or not. "Well, lets just get this over with so I can stop being paranoid", I said to myself. So I bought the test and headed home. I told Mike what was going on; he told me to calm down and that he would be right over.

As soon as he came over, I rushed into the bathroom and took the test. After the two longest minutes of my life (or so it seemed at this point in time) I turned the test over and there it was, a positive test. We were pregnant. Tears were shed by both of us, hugs and kisses were shared and fear of how our parents would react. At this point in our lives we determined that we were capable of starting a family, but this wasn't exactly the way we planned for it to start. After sharing the news with both of our parents, we were suprised with how well they took it and how supportive they were of us and our baby to be. The news of course was shocking to all, but at the end of the day we all smiled and look forward to our future as Parents, Grandparents, Aunt and Uncles.

We wanted to wait until three months to share our news with extended family and friends. That seemed the appropriate time to share this type of news considering at twelve weeks your chance of miscarrying goes down tremendously. In the meantime, Mike and I found a beautiful home to live in together and began our lives as a family.

Mid-september came and this was our three month mark of being pregnant and my scheduled twelve week sonagram. This would be the first time we would see our baby. Mike held my hand as the ultrasound technician rubbed the cold gel on my belly and proceeded to place the transducer over it. I will never forget the look in Mike's eyes when he saw our baby for the first time. He was amazed, I was amazed. It was like nothing we have ever seen before. This moment made everything so real for the both of us. He kissed me on my forehead and told me that he loved me. I fought to hold in my happy tears but let a few trickle down the sides of my cheeks. There was my baby, moving and living inside of me. I was a Mommy.

At this scan, the ultrasound tech looked over the baby and checked for the nasal bone and the nuchal translucency. As the tech was measuring the back of the baby's neck she kept saying she could not get an accurate reading. She said that a baby's neck should be no more than 3.0 mm for a normal reading, our baby was reading 3.7mm. She also checked to see if the nasal bone was present and was having trouble finding the nasal bone. I looked over at Mike and he was beginning to look scared, I told him not to worry and that everything was okay. After the tech finished with the scan, she said she wanted to bring in the doctor to try and get a better look and measurement. This really made Mike nervous, I could tell by the way he was looking at me. I didn't understand, why was he getting so nervous? "Everything is fine," I said again to him.

When the doctor came in she looked over the baby and got measurements of her own, the baby still was showing a 3.7 mm. She then turned the light on and explained what this all meant us. She said that a lot of times the baby will have a higher NT scan, some baby's even go up to 8.0mm and still turn out to be ok. She also brought up the fact that the baby did not have a present nasal bone and that this would make our risk higher. What did she mean higher? Higher for what? At this point I was very confused and cut her off while she was talking. "What do you mean our risk will be higher? Our risk will be higher for what?" The doctor then said to us, "Down Syndrome". I immediately said to myself, oh come on. What are the chances of our baby having down syndrome? The doctor explained that it would be smart for us to talk to the genetic couselor before we left and we did just that.

The genetic couselor was very kind to us. She explained further what the scan meant and what our risks could be. She said we will find out our risks once our blood tests come back. She also said that if we wanted to have a CVS done, we had to do it that day or it could not be done. Invasive testing is not something I had ever pictured myself having to do. I declined the testing, but did opt to have an amniocentesis if my risks came back high. We scheduled an amniocentesis for September 28, 2012. I did not think for a second that the risk of the baby having down syndrome would be high and that I would probably opt out of having the amnio done as well.

A few days went by and I patiently waited for a call from my doctor with my results. Finally, my phone rang and the caller ID said "Blocked Call" and I knew it was my doctors office. "Megan I want to let you know that the blood results have come back. Now with the abnormal blood results, absent nasal bone and the elevated nucal translucency your risk is 1 in 5 for Down Syndrome". His words will forever echo inside my head. He asked me if I had any other questions at the moment and that he knew how hard it must be to hear of such a high risk for a young woman. Questions? Right now the only question I had was, why is this happening to us? Why couldn't we have a pregnancy without any worries. I wanted to know why out of everyone I knew that was or is pregnant, we were the ones going through problems. Mike and I were just beginning to accept our new lives as parents and were ready to share our news with everyone.

I hung up with my doctor and called my mom. I did not call Mike, the last thing I wanted was to tell him this over the phone. My mom of course soothed me while I heard this and reminded me that this happens to a lot of women who are pregnant. That there are a lot of false positives with these tests. Nothing is set in stone and that I had to keep my head held high because there was still an 80% chance that everything was fine. Mike also felt the same way. He said that we should not worry and that our baby will be perfectly fine. There was no doubt in his mind, my parents or his parents that our baby would be okay. I was against all of them on this. I was determined to believe that our baby would be diagnosed with down syndrome. Deep in my heart, I knew that there was something going on with our baby. I knew that God would challenge me, and not because I needed a "wake up call" or "punishment", I knew he would challenge me as a mother because he knew that if anyone could handle being a mother to a baby diagnosed with Down Syndrome, it would be me.

Mike and I asked our parents to put off telling extended family and friends until we got the results from the amniocentesis. Hiding the fact that I was pregnant from even some of my best friends was one of the hardest things I have ever done. But I wanted to be sure that everything was okay before we went ahead and shared our special news with our friends and family. The next two weeks were absolute torture, I wanted to fast forward to September 28 everyday. I wanted to take the amniocentesis and know what we were up against so I could prepare for our sweet little one. Mike never really wanted me to have the invasive testing done. "Why risk having this procedure, we could lose our baby and what if everything is fine? Why can't we just go on with our pregnancy and hope for the best?" he would ask. I just simply needed to know what was going on with our baby. I wanted to know so that if our baby was diagnosed with down syndrome, I wanted to be on top of everything and prepare for him in the best way I possibly could. My family insisted that our baby was okay, I insisted that yes, he is okay.. but he will have down syndrome. I don't think anyone understood what was going through my head during those two-three weeks. They probably wondered, why is she stressing herself out. Why can't she just hope for a "healthy" baby. Little did everyone know, that God instilled this power in me to face what I was up against. He helped me to see the bright side of this difficult time and guided me to a place where I could accept the fact that our baby could be diagnosed with DS.

September 28 finally arrived. It was very important for me to have my mother with me that day. She made sure that she took off of work just to be there for me and Mike. Having her with me that day reminded me that everything was going to be okay.  Before the doctor started the procedure the ultrasound tech checked on baby and made sure he was in a good position for the testing to be done. She gave us the news that the baby was a BOY and this made Mike one very happy Dad. Of course, Mommy was very happy too!  She also re-checked his NT scan and his nasal bone. She claimed that the NT scan was the same which was very good and his nasal bone was present. We were so thrilled to hear all of this good news. Finally, something good to report on. The procedure was relatively quick... I held Mikes hand, kept praying that the baby would be okay. It was not painful as I had read it to be, but it was very uncomfortable at times. The baby was not too happy about having something puncture through his little home. The doctor, Mike and my mom said that he was very jumpy and even touched the tube with his foot. After the testing, I was told that I needed to take it easy for the rest of the weekend and was not allowed to do any strenuos activity. On the following Monday we would recieve our FISH results. An amnio has a 99.4% accuracy.

We went through the entire weekend anxiously awaiting a phone call on Monday with our FISH results. FISH results are preliminary results that will tell you if your baby has Trisomy 21 which is also known as Down Syndrome. I told the genetic couselor to make sure to call me after 4 pm because I wanted Mike to be with me when I got the results. Unfortunately, Mike was ordered to work nights during this week so he could not be with me when we recieved our results. I told my mom that I would really appreciate if she could be home on Monday afternoon when I get the results; I did not want to be alone when I was told the outcome. Driving home from work on Monday was very difficult. As much as I prepared myself for the worst case scenerio, I was still very nervous. The genetic couselor was calling me on my way home, I hit the pedal faster and ignored every ring from her. My heart was racing and I just wanted to make it to my moms. I flew up my parents development and ran inside the house. Trying to catch my breath I told my mom that Eva called (our genetic couselor). I sat on the couch to try and calm down. My heart felt like it was going to jump right out of my chest and I looked at my mom and asked her for the last time before my life changed, "is everything going to be ok?"...... she looked at me and said, "Yes Megan, everything will be ok". My phone started ringing again, it was Eva. "Do I pick it up!? Oh my god... Mom do I pick it up, what do I do?", I asked. "Yes, Meg pick up the phone or give me the phone I will answer". With that I took my phone and answered the phone call....

 "Hi Megan, its Eva from Maternal Fetal Medicine. We have your FISH results here and I want to let you know the preliminary results did come back positive for Trisomy 21. I am so sorry". The first thing that came out of my mouth was "Ok." I did not know what else to say at this point. She asked me if I had any questions at the moment and I simply told her that right now I just wanted to process everything and that I was sure I would have questions for her in a few days. My mom was in shock and in disbelief. She took the phone from me and asked Eva, "How does this happen? My daughter is 24 years old, she is young, healthy and there are no traces of down syndrome in her or Mike's family." Eva then told my mom that this happens at random, and it even happens to more young women than it does to older women. That the risk should be 1 in 1,005 for Megan but her risk came 1 in 5 and she happens to be that 1. After a few short words, that I don't even remember hearing because I was in my own world, my mother hung up with Eva and hugged me and held me tight. She said she couldn't believe that this was happening and that I was right all along. I consoled my Mom and told her everything was going to be ok. I told her that my son will be a beautiful baby and that he has the best Mom. She told me that she couldn't believe how well I was handling the news. I couldn't believe it either. How in the world was I not crying at this very moment? Why wasn't I in tears grieving over the child I had "lost"? It wasn't long before the tears started streaming down my face. The reason I started crying was due to five missed phone calls and text messages from Mike wondering how everything was going and if we heard anything yet. How was I going to give him this news? How could I tell him when he had to work all night. I couldn't bear the thought of telling him, but he knew that when I wasn't answering him, something was wrong. I finally picked up his last phone call and he said to me, "Not good, huh?" and I responded to him by saying "I was right babe, I knew it all along, our baby has down syndrome".

When I thought my life changed the day I learned I was pregnant, I was wrong. My life changed the day I learned that my unborn son was diagnosed with Down Syndrome. Pregnancy should be the easy part, but our pregnancy has been the hardest up to this point. I knew that I could handle this, that I could prepare for our baby and give him the best life possible... but someone else felt different. After the first two weeks of our news, Mike did not handle it well. There were things discussed that I will not share, but as you should know abortion was NEVER an option. I knew that at this moment in time, Mike could not come to terms with the fact that our baby would be "different". I knew that he had to process all of this and grieve over our news; but it wasn't easy for me. There I was trying to stand tall and face this curveball that was thrown our way, and here Mike was trying to avoid it. I did not allow myself to cry around him. I knew I had to be strong and show him that we can handle this. That we will be able to give our son a beautiful life. The grieving process took some time but I let him have it. I respected his feelings and he respected mine. Once he saw how happy I was and that I was buying baby clothes and singing to my belly, it started to become real again for him. He came around and slowly was letting go of the hurt.

God helped me every step of the way to show Mike and our families that this baby will be a true joy to each and every one of us. God instilled me with the power to show everyone my true love for my unborn son. I announced to Mike that I was ready to share our news with friends and extended family that we were pregnant. I waited for so long, keeping our baby a secret and I no longer wanted to keep it hidden. We revealed our news to friends and our parents shared the special news with all of our families. We finally felt like we could breathe, move forward with this pregnancy and begin to enjoy it.

The testing of course does not stop with the amniocentesis; but I will cut it short and make it easy for all to understand. Baby's who are diagnosed with Down Syndrome have a 50% chance of having a major heart defect. We have already had our fetal heart echo sonagram done and also our anatomy scan. Our son passed these tests with flying colors. He has no major heart defects and is measuring "normal"... just as any other baby. This does not mean that this cancels out any minor heart problems. There is still a possibility that he could have a minor heart defect, but the fact that he does not have any major heart defects is a beautiful sign and he will not have to have open heart surgery as a newborn. We will go for two more sonagrams before he is delivered and those sonagrams focus on his growth. The doctors want to make sure that he is growing consistently and that there are no indications of any other issues. Because Michael is diagnosed with Trisomy 21 the placenta also carries Trisomy 21. At any time my body can sense that something is different and shut off the placenta which can cause a miscarriage, which at this point would be considered a still-birth. We have no doubt in our mind that our son will not have to suffice to any other problems while in the womb. We pray each and everyday that he will have a safe and healthy delivery for when he decides to grace us with his presence.

We have already contacted early intervention services (a program that you will all learn to know about through my blog), have his pediatrician lined up, a beautiful nursery that is almost ready for him, reached out and have joined several support groups, and are reading up on down syndrome each and everyday.

As you can see, my story is far from short. I wanted to start this blog to recognize our unborn sons diagnosis and to share it with all of our friends and family.One of my main goals with my blog is to raise awareness of what Down Syndrome really is. We want to show the world what our son is capable of and how alike he will be to every other baby. It is amazing the amount of self-satisfaction that I have in my life for a mother who is about to have a DS child. God has not "burdened us" he chose us and will bless our lives by giving us the chance to spend a life with a person that will smile more than anyone we know. Our son will enjoy all things in life and will not know what it is to take something for granted. As far as I know, children and adults that are diagnosed with down syndome are the happiest when they are making others happy. How many "normal" human beings can you say are like this?  

If I could, I would sit with each and every one of my friends and family and tell you all the same story, but I find that it is much easier for me to share it with you through my blog. I want all of our family and friends to follow this blog because this is where I will ultimately update on our sons progress and inform you about our lives as a family. I want to share our son with all of the people whom we love and those who love us. We want all of our family and friends to know that we are happy and we feel so blessed. We are absolutely thrilled to be parents and we cannot wait to finally have our son in our arms. He is perfect and he will be absolutely beautiful. I found my way through all of our hardships by instilling my trust in God. He has given us the chance to raise a baby who will change our lives forever. Our son has already shown us how to love indefinitely.

To say to you that we aren't nervous or worried would be a lie in itself. We worry about our sons future and the obstacles he will have to face; but we know that he will have the best parents that will push him to strive for the best in every obstacle and battle he faces. We will be his biggest advocates and his #1 fans. In all seriousness, what new parent isn't worried or nervous about their childs future? We all worry, it is part of being human. And that is exactly what our son is, he is a human being.. he is our baby. Down Syndrome does not define him. He simply just has three copies of his 21st chromosome and he is our *Miracle*.....